Monday, 2 September 2013

Bye Bye Wigglies!

The new old wiggly line
This morning we left early for Great Ormond Street Hospital. We had to be there for 8am, so Asher stayed at his grandmother's house for the night, which left us free to concentrate on getting Adi ready and out.

She was having a general anaesthetic so can't eat after 2.30am. She's been a bit nervous about the whole thing, so she was sleeping in our bed for comfort. Usually when she has a general anaesthetic, I wake her around 2am for a snack to see her through but I didn't set my alarm properly and for once didn't wake up until 4.15am by which time it was too late to feed her. I tossed and turned for the next couple of hours feeling very guilty. Adi slept like a log.

Adi likes to know what is going on, so last night I had explained the procedure and that she wouldn't have breakfast until after she'd been to sleep and had her wigglies out. As usual, she was a superstar and didn't nag for food other than to check we had something for after the operation. We were initially told that as she was one of the oldest, we'd probably be seen towards the end of the morning. To our surprise at 9.30am they told us to go down to theatre! As removing the Hickman line is a quick procedure, they decided to do her earlier. Phew! Barely 30 minutes later, they called to say that Adi was out of the theatre and awake. All went well, though the cuff that holds the line in place inside her main artery was left behind and will stay there forever now. We weren't expecting that. Adi was fine but somewhat grumpy and distressed by the canula (needle and tube) that had appeared in her hand. It didn't take long to persuade her to eat and drink something but Adi was still concerned that 'they haven't finished yet'! She insisted she needed to go back to theatre.

This had been a problem during Adi's radiotherapy. As she falls asleep whilst they are administering the anaesthetic, she doesn't see them flushing the line, etc. so doesn't know they've finished the procedure. She then feels very disorientated and confused and needs some sort of closure.

This time, Adi insisted she needed to go back to theatre to have her white wiggly flushed (she asked for the anaesthetic to be given through her red line). I pointed out that she didn't have her wigglies anymore and when I showed her they were gone, she got very distressed. Adi repeated over and over, that she needed them put back in. I was a bit lost at what to do but one of the nurses, who's been a bit of star during the last year, had a great idea. Hayley leads the IV team, we call her 'the plumber' as she deals with the lines and tubes that are inserted into the kids all through the hospital. She really knows her stuff and takes time to talk to the family and find the exact solution that suits the child. Hayley kindly led us to her office and found a wiggly line that we could take home. She told Adi that it was her old line, just cleaned up a bit. Hayley put it in a bag and Adi was very happy to be taking her line home with her afterall.

Now we are home. Adi is happy and playing and trying to work out how to reinsert her line - afterall, they've been a part of her for a third of her life!! We are hoping that in a day or two, she will forget all about it. We have to keep the wound dry for another 5 days but we are all excited and Asher is already planning the next swimming trip!!!

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